PRIMARY PERITONEAL CANCER
Comments
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Hi Donnamusicgang said:Afraid I have this
Hi Eileen and everyone else on this discussion board. I am 60 years old, and I have been having symptoms for several days, and when I entered them in the Mayo Clinic's Symptom Checker, Primary Peritoneal Cancer came up as a possibility. I had never heard of it so I started researching it and found your website. That being said, I know this might all be premature, but I figured there are no better people to ask some questions of than people who have it, or have a relative who has it. It is scary to think about. I am a firm believer though, that you have to educate yourself and be your own advocate or you might get blown off for precious months before someone finally listens to you. I am plagued with; abdominal pain; pelvic pain and pressure; unexplained weight gain; huge belly (look like I'm pregnant); I have hardly any appetite but make myself eat and feel full after eating very little; I urinate a lot; feel a bit nauseous; feel almost constipated but when I do go it's loose; I already have a diagnosis of COPD and have dealt with it well for years, but suddenly I am extremely short of breath.
Those are my symptoms. I called my pulmonologist in March when it was just the new shortness of breath. I can't get in to see him until June. I had a hysterectomy when I was 26 because of early stage uterine cancer (didn't take ovaries out). I never had to have chemo or radiation. I also have had 2 malignant melanomas removed. I live in Lafayette, Indiana and I will talk to my primary care physician tomorrow. But, if I need to see a gyno/oncologist there is no one here in Lafayette. I see you are in the Chicago area Eileen, and I am wondering if you have any recommendations? I know I may be putting the cart before the horse, but I want to be prepared. I also want to be able to react quickly if I'm told, "Oh you just have a little gas." or some other dismissive comment. Everything I have read says THE most important thing you can do right from the start is have a great gyno/oncologist.
Anything any of you can offer by in the way of advice or recommendations would be appreciated! How do my symptoms compare to what some of you have experienced? God bless all of you and thanks for your time.
Donna
I have just been reading your post titled "Afraid I have this" and I am sorry to say that you have exactly the same symptoms I had. I was diagnosed with PPC last November. My stomach was bloated and I thought I had constant "gas" as it was very hard and I couldn't suck it in. I thought I had just put on weight. I got full very quickly and needed to open my bowels after each meal but only did a small amount. I did urinate frequently also. This was a symptom of fluid in the abdominal area. However (I didn't realise this at the time) but I also had fluid around my lungs which made breathing extremely difficult.
I went to my GP (primary care doctor) who sent me for an x-ray. The x-ray showed up fluid around both lungs. I was referred to the hospital where they did a chest drain (plueral effusion) and drained off 3 litres of fluid from my right lung. They didn't know where it had come from or why the fluid was there. When they tested it they found cancer cells in it. I had a CT scan and that showed up tiny cancer cells in the lining of my peritoneuum (stomach!!!)
I was referred to a great gynae ocologist and have just finished a course of chemo.
I really hope you can get to the bottom of this and wish you all the luck in the world. Please post again soon and let us know how you are.
Take Care Tina xxxxxxxxxxxxxxxx0 -
Primary Peritoneal Cancer - Need AdviceCH1836 said:Hello Everyone,
It's been a
Hello Everyone,
It's been a few weeks since I last visited the site, I had my 3 month check in February,
everything was fine, my CA125 was 6.
Some women do not have an elevated CA125 with PPC, my CA125 prior to surgery was 17, so for me there has to be other diagnostics to determine disease.
My GYNO is wonderful, very compassionate and caring, I trust him, but there's only so much that can be done.
This becomes a wait and see, and in the meantime you make the best of each and every day. I've read the posts, having an gyn oncologist is best, they know how the disease works, some physicians know very little about PPC, other than you treat it as ovarian. The more I learn, the more I see that PPC is being treated as a chronic condition.
Keep yourself as healthy as possible, eat well, rest and surround yourselves with loving family and friends.
If your blood counts are at a good level prior to treatment, you're able to tolerate them better.
During my chemo sessions, I did notice that the women who were very frail seemed to be under weight. I know how hard it is to have an appetite at this time, but my family forced me to eat and when I couldn't, I drank ensure suppliments. For me it helped me tolerate the treatments, and although it took about 7 days for me to regain my strength, my blood counts were normal prior to the next round.
I wish you all strength and courage, and hugs and kisses to your family and friends who rally with you in support
All be well, Caryn
Hi,
Thank you for your comments...my mother's had fallopian tube cancer that spread to the peritoneal area. She underwent surgery and chemo and was in remission for two years. Now she is considered a stage 4, however, her ca-125 is 25 and has never been elevated. What other ways has your doctor been monitoring you? Also, is there anyone who can recommend what chemo they have been on. Are some chemo's more successful than others or does it end up being the same. My mother was first treated with taxol and carboplatin. the doctor mentioned gemzar or doxil with carboplatin. they are saying the nodules on the peritoneal lining may be too small to biopsy so depending on what the tumor board comes up with tommorrow, she may start chemo next week. my mother is not symptomatic right now so doctor said she could wait, because whether she starts treatment now or later the outlook would be the same (didn't know what she meant by that, but I did not want to ask in front of my mother). Needless to say other doctors have told me to start treating asap and my mother seemed like she wanted to start treatment now. i am frustrated with her doctor, because she is so wishy washy, however, my mother's lymphoma doctor (she has hodgekins lymphoma also, that is in remission) is awesome and has always looked out for both cancers. she is followed up every 3 months by both doctors and every 6 months gets a catscan (that's how they discovered the cancer). i have always had to keep on top of the gyn onco and at this point the chemo will do what it has to do, so i don't think it's worth uprooting my mom and delaying things by going to someone else. what upset me more is that she told me my mother does not qualify for clinical trials, because she has lymphoma, but I wanted to see if she could be treated with avastin. does anyone know if avastin is still a clinical trial and if it is helpful. i am willing to pay for whatever insurance won't cover. i am overwhelmed and appreciate any comments. Also, has anyone been treated with avastin or anything, while in remission (to prevent cancer from returning).0 -
Another newbieunknown said:This comment has been removed by the Moderator
Hi all
I'm just coming through my first (and prayerfully) my only round of surgery and intensive chemo for PPC. I was really just going right through it like a warrior and then right after the chemo ended and I got my first all-clear CT scan, I'm like "what the hell!!!!" What just happened to my life? What is the possibility I'm going to continue to live to 97 like in my plans? What do I need to do before I go? Is there a plan for me?
I'm focusing on life on a day to day basis and getting the most enjoyment out of everyday but there's definitely a haunting and sometimes tearing (or as I like to call in "inappropriate eye leakage) which happens at the most inexplicable moments. Like just be happy as hell to sit in a movie theater with my girls.
At the last visit, my doc said that the Avastin (which I'm on for the next year) is really demonstrating a strong positive result...providing longer remissions. So I'm hopeful, grateful, believe in the Great Spirit, and after all that, still have a sadness that is always easily accessible and right under the surface.
Thanks for all you guys being out there and sharing your stuff. McE0 -
Hiya McEMcE said:Another newbie
Hi all
I'm just coming through my first (and prayerfully) my only round of surgery and intensive chemo for PPC. I was really just going right through it like a warrior and then right after the chemo ended and I got my first all-clear CT scan, I'm like "what the hell!!!!" What just happened to my life? What is the possibility I'm going to continue to live to 97 like in my plans? What do I need to do before I go? Is there a plan for me?
I'm focusing on life on a day to day basis and getting the most enjoyment out of everyday but there's definitely a haunting and sometimes tearing (or as I like to call in "inappropriate eye leakage) which happens at the most inexplicable moments. Like just be happy as hell to sit in a movie theater with my girls.
At the last visit, my doc said that the Avastin (which I'm on for the next year) is really demonstrating a strong positive result...providing longer remissions. So I'm hopeful, grateful, believe in the Great Spirit, and after all that, still have a sadness that is always easily accessible and right under the surface.
Thanks for all you guys being out there and sharing your stuff. McE
I too have PPC & was diagnosed Nov 2009. I do feel like you some time, as I think "what on earth has happened to me?" However I have a girlfriend who I met just before I was diagnosed who had also had PPC. She was diagnosed this time 3 years ago and finished her chemo Sept 2007. She is alive and really well - living life to the full and is my inspiration. She is now on 6 monthly check ups and her latest CA 125 this Monday was 7. How great is that. My last one was 65 as I finished chemo March 26th. I will get my baseline reading in June.
Having PPC is not a death sentence as my friend Teresa proves. She doean't think about it until the day of her check up. So we can all beat this the same as my friend.
Take care & good luck. Tina x0 -
I am 38 and BRCA positive.
I am 38 and BRCA positive. MY PPC was found during gallbladder surgery in August of 2009. I went through 6 rounds of taxol and carboplatin. My CA125 went from 1800 prior to debulking to 6 rigth now. I am in a 12 month study recieving a low dose of Xyotol. So far so good. But I am scared and wasting valuable time crying. I have two little boys that are the light of my life. Relieved to find people that can relate to me.0 -
I am 38 and BRCA positive.nancy591 said:scary
Caryn,
Sorry to hear of your diagnosis. Once I started feeling better I too thought this all must be a big mistake. I don't think I joined until I completed my treatment too. I found this board way to scary....I still do. But I also find hope, understanding, support and stories of survival. I think most of us on here have issues with anxiety and fear of reoccurence. I too suffer from ongoing bowel issues and have been to the ER myself so I do understand!!
I have two young kids so I don't have time to sit around feeling sorry for myself. I too find so much to do all day I don't know how I worked full time before. It was absolute HEAVEN to be home with my kids all summer. I stopped working when I was diagnosed.
I wish you a lengthy remission!!!
I am 38 and BRCA positive. MY PPC was found during gallbladder surgery in August of 2009. I went through 6 rounds of taxol and carboplatin. My CA125 went from 1800 prior to debulking to 6 rigth now. I am in a 12 month study recieving a low dose of Xyotol. So far so good. But I am scared and wasting valuable time crying. I have two little boys that are the light of my life. Relieved to find people that can relate to me.0 -
cancer and kidsBuffalo123 said:I am 38 and BRCA positive.
I am 38 and BRCA positive. MY PPC was found during gallbladder surgery in August of 2009. I went through 6 rounds of taxol and carboplatin. My CA125 went from 1800 prior to debulking to 6 rigth now. I am in a 12 month study recieving a low dose of Xyotol. So far so good. But I am scared and wasting valuable time crying. I have two little boys that are the light of my life. Relieved to find people that can relate to me.
I can relate but you have an advantage. I am 43 with 3 kids, my youngest two are 6 and 4. My kids are my life and my main concern since being diagnosed in Sept of 2008. Unfortunately I had a recurrence after 8months of being off chemo. I had 5 doses of a second chemo that didn't work. I am scheduled to have a PET/CT on Friday. I am desperate to find something to slow this growing cancer down. Enjoy the freedom you have. You truly never know if/when it will come back. I would love to be in your position.
BTW, how is xyotol? Also know tht BRCA positive have better outcomes then those of us who are not BRCA positive.0 -
Nancy,nancy591 said:cancer and kids
I can relate but you have an advantage. I am 43 with 3 kids, my youngest two are 6 and 4. My kids are my life and my main concern since being diagnosed in Sept of 2008. Unfortunately I had a recurrence after 8months of being off chemo. I had 5 doses of a second chemo that didn't work. I am scheduled to have a PET/CT on Friday. I am desperate to find something to slow this growing cancer down. Enjoy the freedom you have. You truly never know if/when it will come back. I would love to be in your position.
BTW, how is xyotol? Also know tht BRCA positive have better outcomes then those of us who are not BRCA positive.
I responded to you
Nancy,
I responded to you but it did not post, so I am not sure you got it. I want you to know you are in my prayers and remind you to always believe you will make it through the next obstacle. My doctor has assured me he has survivors from the 1970's with PPC. And your next remission can last decades. If Xyotol works, it is great! Almost no side effects. I have only had 2 rounds so far. I love my Doctor in Buffalo, he is world renound if you ever want a second opinion. Prayers for you and all of our sisters...
Colette0 -
I am 38 and BRCA positive.
I am 38 and BRCA positive. MY PPC was found during gallbladder surgery in August of 2009. I went through 6 rounds of taxol and carboplatin. My CA125 went from 1800 prior to debulking to 6 rigth now. I am in a 12 month study recieving a low dose of Xyotol. So far so good. But I am scared and wasting valuable time crying. I have two little boys that are the light of my life. Relieved to find people that can relate to me.0 -
Hello BuffaloBuffalo123 said:I am 38 and BRCA positive.
I am 38 and BRCA positive. MY PPC was found during gallbladder surgery in August of 2009. I went through 6 rounds of taxol and carboplatin. My CA125 went from 1800 prior to debulking to 6 rigth now. I am in a 12 month study recieving a low dose of Xyotol. So far so good. But I am scared and wasting valuable time crying. I have two little boys that are the light of my life. Relieved to find people that can relate to me.
I am scared too. My children are grown up but I love them dearly and I am still their mom. My CA 125 was 119 at diagnosis and is now 65 after 6 rounds of carbo/taxol. I am not happy about this as I know under 35 is what is considered cured but that is what I have and have to come to terms with it.
Xyotol - I've not heard of it. Is this a second line treatment for PPC? This maybe something I might be offered.
I so can relate to you. I am 50 years old and am no way ready to leave this world. Please keep posting and we can support each other. Much love Tina xxxx0 -
BuffaloBuffalo123 said:Nancy,
I responded to you
Nancy,
I responded to you but it did not post, so I am not sure you got it. I want you to know you are in my prayers and remind you to always believe you will make it through the next obstacle. My doctor has assured me he has survivors from the 1970's with PPC. And your next remission can last decades. If Xyotol works, it is great! Almost no side effects. I have only had 2 rounds so far. I love my Doctor in Buffalo, he is world renound if you ever want a second opinion. Prayers for you and all of our sisters...
Colette
I am being treated at Memorial Sloan Kettering in NYC. Buffalo is very far from me. I wonder if Sloan is doing that clinical trial. Collette, did you join our facebook page? It was started by Nancy707. here is the link:
http://www.facebook.com/?ref=logo#!/group.php?gid=114755145226264&v=wall0 -
ppc
HI THERE,
I AM CONCERNED FOR MY 57 YR OLD SISTER.WE WILL FIND OUT IF SHE HAS PPC FRI. I HAVE BEEN READING ABOUT YOUR CONCERNS WITH THE BREAST CANCER GENE. NINCI, YOU ASKED FOR ANY OTHER INFO REGARDING ANY OTHER CAUSES.
WELL HERE GOES.
MY MOTHER DIED OF COLON CA AT AGE 36. HER FATHER,(OUR GRANDFATHER) DIED OF COLON CANCER AT AGE 44. MY MOTHER'S SISTERS HAD AN ASSORTMENT OF SM. BOWEL CA,STOMACH(GASTRIC) CA,AND RENAL CA. WHEN MY SISTER HAD A MALIGNANT COLON POLYP 5 YRS AGO AT AGE 52 AND TOLD HER SURGEON HER FAMILY HISTORY HE SAID SHE NEEDED TO BE TESTED FOR LYNCH SYNDROME. SHE WAS POSITIVE FOR THIS. IT IS CONSIDERED THE "COLON CA GENE". SHE THEN HAD TO HAVE HER ENTIRE COLON REMOVED (SM. BOWEL HOOKED UP TO RECTUM) AND A COMPLETE HYSTERECTOMY.LYNCH SYNDROME IS RARE AND INVOLVES MANY CANCERS-THE GREATEST RISK BEING COLON CA ,THEN UTERINE,BRAIN,OVARIAN,RENAL,SM. BOWEL,PANCREAS AND PERITONEAL!!!!ALL OF US SISTERS WERE THEN TESTED. TWO OF US 5 SISTERS HAVE LYNCH SYNDROME. I DO NOT.
READING THESE ENTRIES I HAVE HEARD MENTION OF COLON CA AND UTERINE CA IN YOUR FAMILIES OR YOURSELVES. IF YOU HAVE THIS CANCER,PPC, AT A YOUNG AGE YOU NEED TO LOOK INTO LYNCH SYNDROME.IF YOU DO HAVE IT YOUR CHILDREN HAVE A 50 PERCENT CHANCE OF HAVING IT. LUCKILY I DO NOT HAVE IT SO MY GIRLS CAN NOT HAVE IT. A LOT OF DOCTORS ARE NOT EVEN AWARE OF THIS SYNDROME, OR WHAT ALL THE OTHER CANCERS ARE THAT YOU CAN GET.
I AM SURE MY SISTERS CA WILL BE LYNCH RELATED.
SHE COMPLAINED OF DIARRHEA AND CONT. BLOATING OVER 6 WEEKS. HER CT SCAN SHOWED ALOT OF ASCITES AND A LARGE PELVIC MASS. SHE HAS CAKING IN THE OMENTUM. SHE HAD A COMPLETE HYST. 5 YRS AGO. I HAVE A FEELING HER CA 125 WILL BE VERY HIGH.
PLEASE LOOK INTO THIS LYNCH SYNDROME-ESPECIALLY FOR YOUR KIDS TOO.!
DID ANYONE HAVE CHEMO FIRST, AND THEN SURGERY?
THANKS-I WILL KEEP YOU POSTED ON MY SISTERS DIAGNOSIS.
MORIA/MILWAUKEE WI0 -
PPCnicnol said:sharing info about my mom
Hello, my mom was diagnosed with PPC last February after her surgeon found masses on her omentum, colon, ovary during surgery to remove her gall bladder. She had symptoms of IBS for a whole year before the nurse practitioner she had been seeing for "her nervous stomach" finally sent her to a gastroenterologist because she had tried everything from Prozac to Immodium and couldn't get rid of her symptoms! She is Stage III, she had 9 rounds of chemo, debulking surgery and 9 more rounds of chemo which ended in Oct. 2009. She has had her CA125 levels checked twice since then and so far so good. My question is, did any of your mom's also have other cancers earlier in their life? My mom had colon cancer at 53 (20 years ago). She had 18 inches of her colon removed, no chemo, all was well. I am just wondering if there is a connection. Also, if the cells of PPC are the same as ovarian cancer cells, how do they know its PPC????
Anyway, I feel like a ticking time bomb. She has not had genetic testing as far as she knows. She doesn't ask very many questions about what she has, what they are doing to her, etc. she's from that generation where you don't questions doctors! Drives me nuts!!!
Lisa in Michigan
NICNOL-SEE MY POSTING-I A NOT SURE IF I SPELLED YOUR NAME RT THE FIRST TIME.SHE NEEDS TO BE CHECKED FOR LYNCH SYNDROME!!!! GOOGLE IT AND RESEARCH IT. ITS IMPORTANT FOR YOU AND YOUR CHILDREN.
MORIA0 -
Moria....Lynch Snydrome asmoria said:ppc
HI THERE,
I AM CONCERNED FOR MY 57 YR OLD SISTER.WE WILL FIND OUT IF SHE HAS PPC FRI. I HAVE BEEN READING ABOUT YOUR CONCERNS WITH THE BREAST CANCER GENE. NINCI, YOU ASKED FOR ANY OTHER INFO REGARDING ANY OTHER CAUSES.
WELL HERE GOES.
MY MOTHER DIED OF COLON CA AT AGE 36. HER FATHER,(OUR GRANDFATHER) DIED OF COLON CANCER AT AGE 44. MY MOTHER'S SISTERS HAD AN ASSORTMENT OF SM. BOWEL CA,STOMACH(GASTRIC) CA,AND RENAL CA. WHEN MY SISTER HAD A MALIGNANT COLON POLYP 5 YRS AGO AT AGE 52 AND TOLD HER SURGEON HER FAMILY HISTORY HE SAID SHE NEEDED TO BE TESTED FOR LYNCH SYNDROME. SHE WAS POSITIVE FOR THIS. IT IS CONSIDERED THE "COLON CA GENE". SHE THEN HAD TO HAVE HER ENTIRE COLON REMOVED (SM. BOWEL HOOKED UP TO RECTUM) AND A COMPLETE HYSTERECTOMY.LYNCH SYNDROME IS RARE AND INVOLVES MANY CANCERS-THE GREATEST RISK BEING COLON CA ,THEN UTERINE,BRAIN,OVARIAN,RENAL,SM. BOWEL,PANCREAS AND PERITONEAL!!!!ALL OF US SISTERS WERE THEN TESTED. TWO OF US 5 SISTERS HAVE LYNCH SYNDROME. I DO NOT.
READING THESE ENTRIES I HAVE HEARD MENTION OF COLON CA AND UTERINE CA IN YOUR FAMILIES OR YOURSELVES. IF YOU HAVE THIS CANCER,PPC, AT A YOUNG AGE YOU NEED TO LOOK INTO LYNCH SYNDROME.IF YOU DO HAVE IT YOUR CHILDREN HAVE A 50 PERCENT CHANCE OF HAVING IT. LUCKILY I DO NOT HAVE IT SO MY GIRLS CAN NOT HAVE IT. A LOT OF DOCTORS ARE NOT EVEN AWARE OF THIS SYNDROME, OR WHAT ALL THE OTHER CANCERS ARE THAT YOU CAN GET.
I AM SURE MY SISTERS CA WILL BE LYNCH RELATED.
SHE COMPLAINED OF DIARRHEA AND CONT. BLOATING OVER 6 WEEKS. HER CT SCAN SHOWED ALOT OF ASCITES AND A LARGE PELVIC MASS. SHE HAS CAKING IN THE OMENTUM. SHE HAD A COMPLETE HYST. 5 YRS AGO. I HAVE A FEELING HER CA 125 WILL BE VERY HIGH.
PLEASE LOOK INTO THIS LYNCH SYNDROME-ESPECIALLY FOR YOUR KIDS TOO.!
DID ANYONE HAVE CHEMO FIRST, AND THEN SURGERY?
THANKS-I WILL KEEP YOU POSTED ON MY SISTERS DIAGNOSIS.
MORIA/MILWAUKEE WI
Moria....Lynch Snydrome as it relates to OVCA is a recently discovered connection. I spoke to my Gastroenterologist about it today. He is moving my colonoscopy up from 11/2011 to this next month because I have some early familial cancer (not much, though) and a history of colon polyps. I have never had a colonoscopy that did not show polyps, though they have always been non-malignant. I went from being scoped every year to every 3 years.......now I have to go back to having it done every year.
The genetic testing was going to cost me $750.00 (my co-pay), so I decided not to have it done. They don't remove your colon as a preventative measure unless they find evidence of malignancy, so having mine checked every year seems the best/safest bet at this stage.
Any pattern of early (before age 50) cancer in a family should be looked at as being possibly connected via Lynch Snydrome. Another red flag are the colon polyps. If you have a total of 20 or more polyps over your lifetime and a diagnosis of cancer, you are considered at risk for Lynch Syndrome. I have had 4 colonoscopies and a total of 16 polyps. That, combined with the OVCA, makes my gastro doc a bit nervous.
Carlene0 -
Hi Moriamoria said:ppc
HI THERE,
I AM CONCERNED FOR MY 57 YR OLD SISTER.WE WILL FIND OUT IF SHE HAS PPC FRI. I HAVE BEEN READING ABOUT YOUR CONCERNS WITH THE BREAST CANCER GENE. NINCI, YOU ASKED FOR ANY OTHER INFO REGARDING ANY OTHER CAUSES.
WELL HERE GOES.
MY MOTHER DIED OF COLON CA AT AGE 36. HER FATHER,(OUR GRANDFATHER) DIED OF COLON CANCER AT AGE 44. MY MOTHER'S SISTERS HAD AN ASSORTMENT OF SM. BOWEL CA,STOMACH(GASTRIC) CA,AND RENAL CA. WHEN MY SISTER HAD A MALIGNANT COLON POLYP 5 YRS AGO AT AGE 52 AND TOLD HER SURGEON HER FAMILY HISTORY HE SAID SHE NEEDED TO BE TESTED FOR LYNCH SYNDROME. SHE WAS POSITIVE FOR THIS. IT IS CONSIDERED THE "COLON CA GENE". SHE THEN HAD TO HAVE HER ENTIRE COLON REMOVED (SM. BOWEL HOOKED UP TO RECTUM) AND A COMPLETE HYSTERECTOMY.LYNCH SYNDROME IS RARE AND INVOLVES MANY CANCERS-THE GREATEST RISK BEING COLON CA ,THEN UTERINE,BRAIN,OVARIAN,RENAL,SM. BOWEL,PANCREAS AND PERITONEAL!!!!ALL OF US SISTERS WERE THEN TESTED. TWO OF US 5 SISTERS HAVE LYNCH SYNDROME. I DO NOT.
READING THESE ENTRIES I HAVE HEARD MENTION OF COLON CA AND UTERINE CA IN YOUR FAMILIES OR YOURSELVES. IF YOU HAVE THIS CANCER,PPC, AT A YOUNG AGE YOU NEED TO LOOK INTO LYNCH SYNDROME.IF YOU DO HAVE IT YOUR CHILDREN HAVE A 50 PERCENT CHANCE OF HAVING IT. LUCKILY I DO NOT HAVE IT SO MY GIRLS CAN NOT HAVE IT. A LOT OF DOCTORS ARE NOT EVEN AWARE OF THIS SYNDROME, OR WHAT ALL THE OTHER CANCERS ARE THAT YOU CAN GET.
I AM SURE MY SISTERS CA WILL BE LYNCH RELATED.
SHE COMPLAINED OF DIARRHEA AND CONT. BLOATING OVER 6 WEEKS. HER CT SCAN SHOWED ALOT OF ASCITES AND A LARGE PELVIC MASS. SHE HAS CAKING IN THE OMENTUM. SHE HAD A COMPLETE HYST. 5 YRS AGO. I HAVE A FEELING HER CA 125 WILL BE VERY HIGH.
PLEASE LOOK INTO THIS LYNCH SYNDROME-ESPECIALLY FOR YOUR KIDS TOO.!
DID ANYONE HAVE CHEMO FIRST, AND THEN SURGERY?
THANKS-I WILL KEEP YOU POSTED ON MY SISTERS DIAGNOSIS.
MORIA/MILWAUKEE WI
I am sorry to read about your family having such a bad time with cancer. You must feel "its not fair"
I have PPC (was 49 at diagnosis), my Mum had bowel cancer, so did her brother & their mother had pancreatic cancer. So your post on Lynch is really interesting and I will go look at the web site. My mother also had breast cancer (that was cured in 1981) & I was tested for the mutant BRCA gene. I was tested positive form BRCA2. Is it possible to also have this Lynch syndrome????? I will look into it.
I have 2 children, a sister with children and cousins so this is important. Thanks.0 -
Tina....were the cancers inTina Brown said:Hi Moria
I am sorry to read about your family having such a bad time with cancer. You must feel "its not fair"
I have PPC (was 49 at diagnosis), my Mum had bowel cancer, so did her brother & their mother had pancreatic cancer. So your post on Lynch is really interesting and I will go look at the web site. My mother also had breast cancer (that was cured in 1981) & I was tested for the mutant BRCA gene. I was tested positive form BRCA2. Is it possible to also have this Lynch syndrome????? I will look into it.
I have 2 children, a sister with children and cousins so this is important. Thanks.
Tina....were the cancers in your family diagnosed before age 50? That seems to be the key that makes Lynch Snydrome a strong possibility.
Carlene0 -
LynchHissy_Fitz said:Tina....were the cancers in
Tina....were the cancers in your family diagnosed before age 50? That seems to be the key that makes Lynch Snydrome a strong possibility.
Carlene
No Carlene. My mum's breast cancer was diagnosed at aged 48 but all of the others were in their 70's. My mum's brca was cured and she went on to live until 75.
Tina xx0 -
PPC
chicagocx - I couldn't agree more. I always refer to it as Primary Peritoneal Cancer and then, of course, have to go into the whole explanation of how its treated like ovarian but its not ovarian... When/if the subject does come up I try to make people aware of PPC as an entity unto itself! And, yea, I was as disappointed as you when I scrolled down only to find discussions on ovarian and not specifically PPC!
I was dx June of '08 with Stage IIIC. Since then I've had 2 surgeries and am presently getting chemo, again. The first time, after surgery, I was able to have taxol/carboplatin 2 weeks after surgery. I also got into the GOG 218 study w/Avastin. After completing the 1-year study, they unblinded my part in it and I did, in fact, get the drug and not the placebo. I think it gave me some extra time because about 2 months after the Avastin was over, my CA125 started going up again. After my 2nd surgery, this past Feb. 2010, I didn't do as well. My chemo had to be delayed and then my doc could only put me on a lower-dose of carboplatin w/o the taxol 'cause I was too weak and my blood levels were too low to do both drugs at once. I get my 6th round of carbo this week and then I'll start on either taxol or gemzar (sp?). for another 6 months.
It's at the end of the next 6 months that makes me worry. I'm afraid the meds are just holding this at bay. My CA 125 went up slightly DURING my present chemo treatment and even though its still within normal limits, it worries me. Just got my blood drawn today for chemo this week so I'm a little nervous waiting for the results.
By the way, one doc I had started me on Doxil and I felt like I was sent to hell! I started bleeding rectally and nasally. I thought I was going to die just from the treatment! My daughter, who is in med school found my present doc that I am very happy with! He found 2 masses that 2 other docs totally missed! He's the director of the division of gyn/onc for the University of Miami. He also told me there is no cure for this, but is a chronic condition to be managed.
Sorry this is so long-winded. Just glad to find a place to vent and learn from others.
Thanks all for your blogs!0
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